Meet Kellen: 2022 Family Advocacy Day Champion
Kellen is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Kellen and his family will discuss his health journey, UCLA Mattel Children’s Hospital’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Kellen.
When Kellen was three days old, his parents knew that something was wrong. After three years searching for an answer, the family finally got a diagnosis. Kellen has chronic intestinal pseudo-obstruction (CIPO) and gastric dysmotility.
“The diagnosis allowed us to be healthy enough to be out of the hospital more,” says Brianne, Kellen’s mother. “It allowed Kellen to catch up and excel developmentally.”
Kellen’s care requires a team that can closely monitor both Kellen and his growth, as well as his ever-changing nutritional needs. The GI team and case manager at UCLA Mattel Children’s Hospital keep Kellen’s nutrition and quality of life on track.
“It was hard to hear a diagnosis that doesn't really have a cure or a lot of research with it, but knowing how his body was reacting allowed for a treatment plan,” says Brianne.
Kellen is growing and has a great quality of life, but that is supported by full IV nutrition that is delivered through a central line—every 12 hours, every single day.
“We occasionally have setbacks where we get central line infections and have hospitalizations where we see doctors who don't always understand the full scope of the diagnosis,” says Brianne. “It can be exhausting to get a treatment plan that doesn't involve significant trauma and a non-typical care plan.”
Insurance has been a struggle for Kellen and his family. “Insurance is the reason I have the job I have, and my husband almost closed his private practice to work for an organization that provides insurance,” says Brianne. “This would have been a huge loss for our small community.”
Kellen currently benefits from California Children’s Services (CCS), the state Medicaid program. However, to qualify for CCS, the family has to spend 40% of their income on out-of-pocket expense.
“This is the only thing that keeps us out of poverty,” says Brianne. “I shudder to think what will occur when he is too old for CCS.
Today, Kellen is doing well. He likes playing baseball, hockey and soccer.